Flame On! (Trigger and Mushiness warning)

Last night I had a meltdown. I haven’t lost control of my emotions or had no logical response in a very long time. A decade? Maybe more. Last night, my nightmares came true. This happens rather often, I presume it is because my fears are actually reasonable. The place I live had a fire. My home was on fire. I am still shaking as a result, but my mind is clear.

A man i had never seen before came to my home, pounded on the door, and told me there was fire and to get out. I turned and grabbed Sprite, and we went outside. My panic was instant. Where do I go? Is it close enough I can go? How far can I make it? Where is the fire? I had no answers, and no shoes. Sprite had no harness or leash and nestled on my shoulders to balance me. This is how I get things done in the house, so this wasn’t out of the norm.

I moved for the office, while calling the apartment manager. I could hear the fire engines coming, someone else had called in. I did consider it but, I had to work on the presumption that my being notified to get out meant they were coming. It was the lat bit of logic I had for a while. I made it rather far, I used the fence and held myself up creeping along. I was the only one outside when the fire went from small to OH MAH FRIGGING GODS THERE IS A GIANT FIRE OH GOD.

I saw it, in a washing machine in the laundry room. There are apartments all around this room, of course. The door was closed, the fire department had to smash it to get into it. They weren’t there yet though, and as the flames went Fwoosh and started eating the building, not just the laundry, I began to cry. The tears were wet, and painful because of my allergy to water. My reaction ranges from full body pain (minimal( to blisters. It was just pain. I back tracked away from the flames and was stuck. I couldn’t be sure home was safe, a sensation that made my panic worse, and I couldn’t get people to answer. I stopped calling folks because I was having trouble breathing. Athsma + Smoke * tears= Cough cough cough.

This is when things get interesting. My neighbors all respect me, every time there is a need they perceive this is shown. There is a strong sense of community with in the hallowed complex. There is also a fear of outsiders, but if you pay rent you are automatically accepted. As people arrived, I did my best to retain the little shred of calm that I thought I had, it was not there. I still suggested that they wake up the manager, it was about eight at night. A lot of people go to bed around then.

The fire department stayed near the fire, and I stayed on the fence. Literally. I watched as they quickly contained the fire, then got it out. The flames were no longer visible by the time we got the manager up. The fire department was more than efficient. In movies and TV they are never that quick and to the point. I know that is to play out the drama but, it really doesn’t credit the fire fighters.

Sprite only tried to escape once, and it was the moment I wanted to. It’s natural to go away from fire. When the fire doubled in size in that split second, she started to bolt. Started. She stopped herself. I want to give her an award, a medal, a treat, and a golden kitty bed that she would never ever use because she was quiet, composed, and she did her job when the other service animals in the complex could not.

A part of my melt down was the pain level I was facing. Standing for more than thirty seconds has me on the edge of my pain tolerance. Past that and we’re entering territory where my systems stop functioning bodily. Circulation cuts down enough that I was blue again. My hands are still a bit oddly colored, it will take time for my body to catch up to itself. The second issue is breathing. The injury to my back spasms and it can paralyze my diaphragm. This is scary when I am not facing fire.

A secondary part was the sounds. Fire is loud, the fire department HAS to be loud. Sirens alone make me want to scream and cry. Even the far away ones. There was banging, hissing, shattering, smashing wooshing sounds. There was also a high level of fear, and fear can be contagious.

My neighbors supported me, for a few moments literally, and then once we could go inside I had help so that if I fell it wasn’t as bad. Then, for the next few hours until the fire department went away, I was checked on by every single person who could do so. Further more, the person alerting people to fire was making certain to tell the people who would be slowest to get out first. It was an act that put him in potential danger and was unselfish even if my not knowing him scared me.

There are rumors of arson today, but I am hoping for either an electrical cause or a cigarette butt left smouldering. a lot of people smoke here, and an electrical issue means that no one purposefully set the building on fire. I don’t want to suspect my neighbors of wickedness, when every single one of them is wonderful. I like them all. Not everyone here gets along with one another but I can talk to every single one of them.

Everyone in my complex has a form of disability, from mobility on to cognitive challenges. Everyone has a different way of speaking and yet everyone here is supportive. I know if I need help, I can ask. I can just scream out for it really, and they will come to my aid. I am left to think on the times when danger came hunting me, and danger did not find me because of my neighbors.

I am safe here, the fire is out and it’s ashes are quickly being covered in snow. I admit I want to see the destruction. I admit my fear of fire is not less but a bit greater. I did not have dreams last night. I was so tired, as I hadn’t slept for a day, that it was beyond me. I am aware that Sprite has not left my side since. She even held it until I was upright this morning, then bolted for the litterbox only to check and see I was following. The cut on my hand (I think it is from the fence, and so did the police) is a little infected but with my immune system that’s fairly normal. If it didn’t get a little pussy I’d worry. It’s not as bad as I expected and my costco gallon of peroxide (it was two bucks!) will get plenty of use.

Sprite and I are fine, no one was hurt. No one lost their shelter or home. I faced my horrid nightmares in reality. Facing fear sucks.

Mourning

After writing my post earlier I left some voicemails with handy men, my friend M said he will pay for it so I can get my bed. I am tired, more so now but as I felt like I was going to scream and couldn’t find peace in my heart I needed to move. I felt pulled, and so remembering I had a ramp decided to risk the scooter breaking down leaving me out in the world. I took my cellphone, my keys, and left the cat at home. I went the way of the pulling sensation, and wound up outside of a beautiful temple. This Buddhist temple is just a block from my apartment. I sat outside and looked at the Lotus blossoms and butterflies, and realized, I belonged. I find that Buddhism has helped me keep calm and not give in to the darkness that pain makes so tempting. Buddhism is not a religion but a path and a way of living, as I was taught. It is compatible with my beliefs.

I sat outside for a half an hour before I decided to go in, and the Abott himself greeted me. He asked me why my heart ached and we talked. I had secretly hoped he would give me permission to continue my relationship with my mother but, “The poison of the heart can poison the soul. Such a pain as you endure was preventable. The poison of the heart will spread. You must remember that your heart is yours.” It wasn’t a way of saying to reject her but a reminder that it is my life and I must come first. Something I knew all along.

I was asked to please come again, as often as I wish, and to bring the cat next time. I ventured out and found the peace that I couldn’t quite grasp. I charged the scooter again while we talked, and decided to risk Walmart. Walmart is a half an hour with these batteries and once there I had to park and charge again. I had another encouter with englightenment. A world war two veteran saw my unique chair and decided to ask if I knew how to get one. I could see his pain, he proudly told me he forgot how old he was and we laughed a bit. I gave him guidance on how to get his wheelchair, as for any of us to admit we need the help of a chair is hard. He told me I reminded him of someone he met long ago in the war. My face, my eyes, but he commented that she had red hair. I didn’t tell him my natural hair is red, and felt a longing for it again. This is twice that I have longed for my hair back at the vibrancy of it’s nature. The black lets me feel safe and I know I look beautiful either way. It is merely difficult. She was a nurse, and he was injured. She was injured as well but hid it so she could continue to serve, her time with him was spent building a trust and she taught him to understand that the enemy wasn’t seeing us as we saw ourselves. It was an interesting story, frightening in some ways but he found comfort in me, and I in him.

I did some shopping, I got a copy of the key to the gate so that my caregiver can actually get in (oops) and a pair of padlocks for my gate. My batteries held so I looked in a few stores and found many things I need, so I took pictures of them with their prices. I bought the nail trimmer that I desperately had to get William, and found two jacket style harnesses one pink and one black on clearance. I sprang for both, and they rang up even cheaper than they were marked. I also got a bit of halloween decore, a little sign that was three dollars and made my entire day. “Wicked Wanda’s Witch Shoppe.” It’s green and a light orange. I named the stuffed witch I got at the dollar store Wanda and she is also green and orange. It’s too perfect to deny. So far this is also my most expensive decoration!

I feel good, if sore. The side walk only has two in accessible areas, one on each side of the road between the shopping center with a grocery store that carries gluten free food, three discount stores, and has everything I could need or want accessibly. I even found the curtains I want for the price I can afford.

I did notice a difference in this neighborhood, normally when I go out I feel invisible and in danger. This time drivers made sure that I knew they were there, and that they saw me. One man stopped when the scooter almost died on the way home and asked if I was alright, since it was going so darned slow. He watched me to the gate of the complex so that I could get home. Normally I wouldn’t want that but I cut it close because I had to backtrack for the gatekeys. Oh I also got some gummy bears. I just needed a small treat and my entire day became such.

Thank you all for supporting me, it gives me strength I cannot find with in myself. I may fear, I may mourn, but I will never surrender. This neighborhood seems very much handicapped friendly, as I found special access points for wheelchairs in areas where it may be more dangerous for a chair to be in the street or normal foot traffic. I’ve never even heard of these things! I dreamed of them. I know better ways around some of the rough spots for next time, though I will wait until the scooter is repaired, I shouldn’t have pushed it. It was stupid, and a mistake. I also feel way better for it. It seems doing what I want is a rarity, and that must change.

The Cliche of Anger

I am tired, in massive pain, and yet I still am riding on the waves of fulfillment. I worked an entire week straight. I am taking a few more days to get back to my standard however, and reminded myself why I do not work in a traditional manner. I would have been fired today for being unable to wear standard clothing for one, and my attitude for another. Every action I take, every interaction I am bogged down by references to the past, lessons, and reminders. I hear my mother’s voice most clearly, and that is not something I welcome. I want to be an individual not the product of my family.

I wasn’t going to post until tomorrow but I was reading a few pages over at Womanist Musings. The proprietor of Womanist Musings has recently outed herself as being amid the disabled. She is beginning to run into the challenges of being suddenly unwelcome, invisible, and at times hated for merely existing. Today one of the commenters told her that she should start a civil rights movement, ignoring the fact that the disabled community has been pulling for equal rights for as long as other civil rights movements have been in effect. Before we go on, I want to remind you my dear reader that every single civil rights movement hasn’t ended, and that the fight for equality is on going no matter what your ism is. This reader seemed to think that a few protests fix everything.

This ignores the protests in New York, the individuals who do sacrifice their energy and at times sanity to try and force businesses to comply with the laws, and it ignores the fact that there are those who came before you and I. This is an erasure of our history. I responded with snideness and sarcasm, ignoring for the few moments it took to suggest a hacksaw so she could remove her legs as “easily” as I can get off of my scooter, the voice of my mother. “All disabled people are angry, they think they have rights.” I am aware that it is the events of today that shape the memories that seem to nitpick at us. Before I was disabled my sexuality was most often the harbinger of a Mommy Memory. “Bisexuals are selfish, they just want to have sex with as many people as possible.” Every time I went to flirt with a woman or a man, I heard something like that.

The myth of anger is just that, a myth. It erases the happy moments with friends and family, it erases the moments where competent and open minded people realize that everyone has rights. The myth of anger is often used to subjugate. Stop being angry, so that I can continue to oppress you. That is what I hear. The expectation that an entire group of people must never feel one emotion is ridiculous yet this is foisted on women of color, the disabled, homosexuals, and countless other oppressed groups, all to control us. Anger is forbidden.

Many times when I am smiling, I am told, “This inaccessible area will be fixed soon, we swear!” The tone is always frantic, that hint of “Oh god she will be mad that we haven’t done this yet.” It doesn’t matter that I am smiling and just nod and say, “Great, thanks for letting me know.” The fear of my anger, which is some how more toxic than their anger or fear is there. I still don’t understand it, but, I see this often. The times when I am angry, I am also not heard. It’s enough for me to want to go back to trying to be Super Cripple, but, I won’t do that.

My anger is valid. Your anger is valid. Anger is not a reason to oppress, discriminate, or subjugate. Anger is not an excuse to not build the ramp in an accessible manner, and anger is not an excuse to try to “just get rid of” someone. I am tired today, and I am trying to seem reasonable. My mind is far from reasonable. I am in truth alone, and am having a small tantrum every time I need to get up to move. My fiance forgot to feed the cats, which merited an hour of sitting there whining about how I wasn’t sure if I could do it, I can’t bend, and their bowls are on the floor.

It wasn’t anger that had me make a really big mess trying to feed them either. That was love. They were hungry so I fed them, without bending. (Sorry honey, but the kitties have to eat too!) It won’t be anger that I let him know he forgot either, but amusement. Every emotion that I have is not anger. The lessons that our parents teach us, may shape what we see but it is the choice that I made in my first experience with disability as an adult that showed me otherwise. I chose to not see anger.

It’s really that simple. Demeaning an entire group of people does cause anger. If you fear our anger so much, stop discriminating. If you come near me right this second and discriminate I will show you anger, but I won’t run you down with my scooter. That’d hurt me too, and you just aren’t worth my time or pain.

To my friends, allies, and fellow disabled persons, don’t forget that every moment that we are alive is the revolution for our people. Every time we are seen out of our homes, with our assistance equipment, service animals, and even having issues, this is our revolution. VIVA LA REVOLUCION! Free my people!

Personal Space

Before I set into writing the latest post, which proves of all things I am still alive and kicking I have a few updates. First, the biopsy came back, and I do not have cancer. Second, I just painted seven paintings in five days. My hands are sore. Why would I paint seven paintings in a week? One was for fun, six were for a contest. I really want to win, but, only time will tell if I actually do. I am certain a few of you will want to see these pictures. The contest was run by Overground EIC, and as I cannot draw yet, I used their line art. The seventh picture was drawn by a local comic book artist named Paul Ziomek. He’s a really nice guy too. So, here is a link to my gallery on DeviantArt and just in case you want to support artists who are local (to me) here is a link to 7000BC, a local comic book group. They have some really cool stories.

I am actually hoping to start a weekly web comic with someone, so if you know any artists who want to audition, let me know. I will be hosting a contest soon. I already have a few scripts, and it doesn’t take too much time for me to write. In fact, I might even update the blog more often if I do that.

Now, here is the actual blog post for today:

Personal Space:

The issue of Personal Space comes up frequently when we are children. We are taught boundaries, we are taught that we cannot just touch strangers. I was taught this at least, and reminded often that my own space was worthless, but I had best not encroach on anyone else’s territory.

As an adult this was the norm until I started using assistive devices. It was then that I learned another facet of ableism included touching these devices, leaning on them, and even hitting them. Would you ever touch a person’s purse? The answer is usually not without permission. Why is it alright then, for people to smack my chair, try and take the key, or even tell me just how cute it is that I use a wheelchair?

You are probably confused by their actions as much as I am, and you also probably experience versions of this as well. I am not sure why it has become the norm for people to tell me that my wheelchair is cute. I understand the perspective of another person who is shopping for a chair deciding mine is really cool and asking me questions, that is perfectly reasonable, and is something I have done myself. I understand a child needing to ask me what I am driving a miniature care for. I do not understand walking up to someone and smacking the top of their chair and telling them how cute it is that they have a sunshade on their wheelchair.

This happened at a Walgreen’s that is just a block away from my house. My Person and I were there, getting some snacks and were going to rent movies after. I was in glee as I had found lotion I could use with minimal reaction, my arms stayed red for only an hour and eyeliner that I was not allergic to, could use properly, and is hard to obtain. This Walgreen’s carries authentic Egyptian Kohl. I am so excited by this that I actually spent all of my extra money on make up. We were about to check out when the Cashier gushed at me, “Oh how cute your chair is.” I looked at her and told her, “Excuse me?” She repeated it. Then, another employee smacks my sunshade and tells me it’s cool. I decided then and there to put a stop to this.

“Do you really think it’d be alright to smack someone’s cane? Do you think I would go around telling you that your crutches are cute if you broke your leg or your cast is cute? Don’t patronize me, don’t touch me or my assistive devices. I happen to think it’s a shame I no longer get to walk through your store. I happen to think it’s a shame you think that acting like an idiot is going to make me want to shop here. If you touch my chair again I will report you to the management, and if you,” Gesturing to the other person, “Speak to me like a child again, I will also report you to the management. This is not how you treat a customer, or any other human. I am sure you think less of me for saying this, but I think much less of you for behaving in an inappropriate manner.” The woman looked as if she would cry, and the young man who had thwapped my chair had backed up considerably. It took a lot of will power to not curse at them. I wanted to. Instead the woman said, “But it really is cute.”

My person knows I dislike advocating. I don’t know anyone who really enjoys it or wants to spend all their time arguing with people about their own right to exist, but, he has accepted that I will and must. He also has accepted that at times, he must as well. He spoke up then, “Don’t patronize her. Trust me, you don’t want to continue down this path. It’s not a threat, it’s just a warning from a fellow Walgreens Employee, that she knows her rights, and you are infringing on them.” He used to work for Walgreen’s, and as a result I know that the staff are taught to be courteous. I am certain that these two people have never really had to interact with a disabled person.

I am not proud of having to put them in their place or making sure that they feel a little bit less than but, I am still reeling with confusion at their actions. It has been almost a week but I cannot figure it out. This isn’t the first time people have told me just how adorable it is that I can shop, or function in society. Each time I have explained, to the best of my ability and as calmly as I can. I have also learned that it is alright to show anger. Any ‘normal’ or ‘regular’ or able bodied person would be angry if I told them how cute their flaws were, or how cute it was that they were absolutely stupid. I am learning that I have the right to anger.

I will go back to this Walgreen’s. It is a very nice store, and they actually measure their aisle displays for accessibility. I caught them in the act, the manager was correcting an employee on the placement of a standee that held some make up, “You can’t put this here. People will be unable to pass.” The employee walked around it, “I can get past it just fine.” The manager then said, “What about people who can’t walk or use a walker? How about this, if you don’t move it, using this measuring tape for a 28 inch radius, you lose your job. I don’t want anyone to sue me over the ADA or anything like that.” He added something else too, “Oh and what about customer service? It’s gotta be a pain in the (censored) to have to ask for help to reach a bottle of lotion.”

I hadn’t had to advocate to them, but I was watching. I was paying attention. I know that the management at this Walgreens cares. If when I return this patronization happens again, I will bring them into it. I will also offer to train their employees. The only reason I did not have to fight them more was that I had left Sprite the Service Cat at home. She wasn’t feeling well and I wanted to go out.

It was still a lovely afternoon, but, it left me chewing over the concequences of their actions and my reactions. I am proud to state that I did not punch the man who touched my chair. I almost did, but I managed to catch my impulse in time, and used my words instead. I have been having a lot of trigger issues with men and my chair lately. They come up behind me and I want to run them down to make them go away. I haven’t given in yet, but, when the strange males who trigger me then touch my chair, all bets are off!

I haven’t much else to say on this matter, beyond, advocate for your personal space. I didn’t at first. When I used the walker and my abusive roommates would pile heavy objects on it so that they didn’t have to carry them, or when they kept dumping things into my chair so I couldn’t use it when it was brand new, I at first kept my mouth shut. I was so used to staying silent so that they wouldn’t punish me or decide to expose me to even more allergens. At first I let people do things like this out of the house too, because I was afraid. I feel less fear when I advocate. I also worry at times that I am being too sharp, too harsh. There have to be times when I am the gentle advocate, and there are. I worry over it even when I am putting in extra effort to not hurt people’s feelings despite their refusal to let me have my basic human rights. It sounds preposterous when I say it or write it, but it feels right to try for extra kindness.

I am also learning that my Autism may factor into my need to not be touched. I have always been extremely sensitive to touch and texture. I like to control what things feel like around me. I once could not adopt a very adorable and well behaved puppy because his fur felt too stiff. I found him a good home but, I couldn’t cope with the texture. Sometimes texture can even cause nightmares. This adds to my unwillingness to let strangers touch me. I don’t hug people often. I do make sure to touch my Person, but sometimes it takes massive amounts of effort. He is understanding when it comes to my reticence, but I also want to make sure he has nothing that he wants or needs for.

What about you? When you advocate does it help your anxiety level or make it worse? Do people infringe on your personal space? This goes for those with sight issues or hearing issues, do people at times touch you just to try and make you function the way they want? What are your reactions? If you are an Autistic, do you also have touch issues? What forms of contact ableism are you familiar with?

Blogging Against Disablism

I have restarted this post twice now. Part of it is my pain clouding my mind and a resistance to taking my pain meds. I have not shaken the habit of taking them only when I cannot stand the pain. This has left me fighting off a meanness that the pain brings up. I don’t even feel it at first, but, then I realize I am harboring a great deal of anger. Once I accept that I can take my pain and that it is alright to take the little pill that lets me do more than just deal with it, I can resume living.

I see this as my truest handicap. I am at risk of pushing people away because I fear being addicted to a drug. I am dependant on the morphine, but not addicted. The dependency is my need to actually have a life. I am starting a business, I am following my dreams which I had presumed dead and lost to me for years. I am also using my handicap to my advantage.

I listened to a speaker last night who came to the United States from China. She has not shed her accent, nor should she. In her speech she explained the prejudices she faces as a result of sounding foreign in the united states. This racism that she deals with overlaps ableism. People look at a disabled woman and see her as stupid, inferior. People hear her and presume she is stupid, inferior. They presume that neither set of people has the capability to do brilliant things. We are raised with this belief system. We are told even if not directly by our parents, by the world we live in which segregates the special children, or forces students to take English as a Second Language courses regardless of need based not on their actual language but on their race.

My most recent example of a person using my disability as an excuse to other me comes from the grocery store. I went in with my Person to pick up some items for a road trip, with a client. I must protect myself from allergens and that was the solution. Sprite was riding behind me, tucked under the sunshade, and hiding behind my body. A woman came up, I am leaving out a description of her because when I write it, I other her. That is not acceptable either. She tried to pet Sprite. I didn’t bother explaining anything to her, I said in a very soft voice, meant to be calm, “Please go away.” She exploded. “HOW DARE YOU!” She got in my face, and I dropped the softness, but stayed polite. “Please go away,” She snarled, “You aren’t doing anything and you shouldn’t have a pet in the store.” I replied. “Please go away. I am doing my shopping and I am not here to befriend you, talk about your pets, nor am I breaking any laws. I do not wish to discuss this matter with you and have been polite thus far, despite your yelling and harassment.” I then floored it, my chair whipping around the corner and continued my shopping. Ten minutes later I hear the sound of my Person being pushed. His grunt of pain reaches me just before this woman is in my face again, “YOU DON’T HAVE THE RIGHT TO BE RUDE TO ME!” That was when I stopped playing nice. I let myself snarl right back, though I did not yell, “Really? Assaulting someone who is not involved in our discussion is rude, trying to invade my space is rude, yelling at me is rude, and showing your own inability to grasp the rights of others is beyond rude. Get out of my way, I don’t really care what you want out of me I am not here for your enjoyment. If you bother me again I will call security.” She flounced away, and I finished my shopping.

As we left, the store manager who had the law explained to her as we entered was discussing the incident with this shopper. She had gone to the manager to have me thrown out. Instead she was told this, “I am sorry ma’am but you have no right to touch her, her wheelchair, or her service animal. The law protects her rights to shop here in saftey, as it does yours.” The woman replied , “She’s just a cripple, she doesn’t have any rights.” The manager was openly angry at this, which surprised me since she’d been a bit of a hard case about it all before. I left then, to the sound of, “She has just as many rights as you do, and if you continue to behave in this manner I will have to have you removed from my store.” The woman then threw herself on the ground and had a tantrum like a toddler.

I learned something from this, that was the point of sharing it. I learned that every person I edcuate becomes an asset. I did not feel this woman could be educated, nor did I feel prepred to try and spoon feed her the information. The burden of fuctioning with a disability is fighting for my rights. I use my disability as a tool to be under estimated. The woman underestimated the ability of not just myself but of others to actually see the humanity with in my body. She under estimated the ability of people to actually listen. I do at times too.

The secret to blogging against disablism? Is to do it whenever you write. The secret to teaching aout disablism? Is to live.

I know this post isn’t as wonderful as I wanted, I am still distracted and out of it. I am not feeling myself. I hope it does encapsulate an idea. By living and not giving up our dreams we fight ableism/disablism. By having lives we fight against disablism. I am partly distracted byt a disappointment with Obama and his failure to sign the Community Choice Act. I am disappointed with his inability to see the human rights that lie at the end of his pen. There is still time, but, his administration has openly stated that there is no reason for him to actually make the changes that free people from being forced into Nursing homes.

Beyond blogging against disablism, I call you to act. Go out into the world, be seen. Educate via your existence.

To read more about Blogging Against Disablism Day, please follow this link.

Speeches

I have promised a catalogue of my speeches. So far these are the files I have gotten uploaded to Youtube.The youtube account name is TextualFury. I know some of the videos are flawed, okay all of them are. Feel free to comment here or on youtube if you have any input.

This speech is titled “What is a Service Animal?” At the end of the speech a copy of both the Federal and State law was handed out, with my business card as I could not explain the entire law with in even three hours. You can see me stand, you can see Sprite the service cat in action too.

This is a speech that is meant to explain my wheelchair. It is called “Thirty Seconds.” The goal of this speech was to work on my gestures, something that I find more challenging since breaking my back. I had to work through a lot of pain to even write the speech. The physical portion wasn’t painful during this rendition, though developing each motion was.

This is the same speech as before with some rewrites. I am trying to focus it into an inspiration with a call to action just to think, to help others, and to hope. This is a better angle but the sound is out of sync.

Here is my Person giving an extemporaneous speech that is meant to last between one to two minutes. Now you know my secret, he’s talented, eloquent, and adorable.This is posted with Permission.

His question was, “What was your favorite TV show during your childhood?” His answer for those who cannot view the video, was MacGuyver. I am planning to transcribe the other videos, though this will take time and I have no idea if I will get to it soon at all.

One final video. This is just the beauty of the local campus. Soft, beautiful birdsong and bright green ivy. This was filmed after the second version of the Thirty Seconds speech and Paul’s tabletopics. It was just too beautiful to not film.

Reality of Choice

It is unfair that we must bear a responsibility to take up slack for people who want life spoon fed to them. It is wrong that we must be better advocates than anyone else around us. It is wrong that we must fight for our basic human rights constantly. No one chooses to be disabled but here we are, fighting anyway. I am tired of wearing the Super Cripple label. I am tired.

Today I was reminded that it is important to be human. I didn’t know I had been working on being Super Perfect again. I do this without thinking. It comes from the need to survive. Growing up without a diagnosis for any of my differences including Autism left me with a need to be extra normal. I used to fail on purpose so that no one would hate me for being smart. They hated me for being me anyway.

I have spent my life trying to blend in with the able bodied and normal. I have never quite managed. Even when I am trying to seem normal, passing as if the only disability I have is my spine, something other shines through. Maybe it is the way I wince at something no one else can hear. Maybe it is the way that I curl my hands up and hold them at my sides. I try to not. Maybe it is the way I look at people, without looking at them. I haven’t made real eye contact in years. No one notices… or do they?

The first paragraph came from my responding to a post on another blog, the blog that forced me to begin writing. It is a post that commiserates with the service animal users, and offers support. Every day every disabled person has to advocate. People tell me often to not get angry. I am tired of not being allowed to have a real emotion because it might upset the normies. I really want to cuss right now. I want to let those words fly out because that’s what the normies would do. They use weird language, from my vantage point. Awkward tones, words that can make less sense because to them the idea of making sense to someone else is ridiculous. The idea that someone could be prejudiced because you do not use a word improperly is foreign.

Today was a good day, if exhausting. I woke up to illegal action by my apartment. The apartment is supposed to give a twenty four hour warning before entering my home. We had three. We also had to avoid being here due to the risks of exposure to allergens and their pesticide use. William spent the entire day in a carrier, just as panicked as I felt at the squeal of brakes, the cacophony of traffic. Sprite was her usual self, thoguh she panicked a few times too. My head still hurts from being next to a bus that had squeaky breaks. I can still hear it, over the TV, over the silence if I turn it off. There is no choice for me there. I cannot escape the overwhelming sounds. I cannot escape the pressure in my head.

I cannot escape the texture of my blanket. Tonight it feels like sand paper. Yesterday it was the softest cloud. The reality is, others have it worse than I do. Others cannot coherently string words together to express themselves. Lately I have been wondering how much “real” autistics suffer. I have been wondering if any other autistic person feels as normal as I do. I don’t feel like I am anything but normal. Anyone else knowing me might not think so but that is due to work.

The reality is I spend every day choosing between fighting for my civil rights or acting normal. I can’t do both. If I act the way that the dominate, able bodied men want I give up my rights. If I do not fight for my rights I will starve. Today I found out that Section 8 is no longer taking applications. This means thousands of people are going to be homeless. They are trying to close the program. Don’t we need more help with housing not less? I am tired of living in fear. As a minority, the disabled face their funding being cut. Do we have a choice? Yes. Is it a good choice? No.

What is the reality of choice? The reality of choice is simply that there is no choice. If you are disabled and able to push for legal accommodation it is a duty. You might not like that idea, but, think about it. Every time someone oppresses you, they oppress a dozen others. Every time you fight back and calmly advocate for your rights there is a benefit, there is a decrease in the oppression of others.

I do not know any disabled person who is unaware of their oppression. Those who face the fear of institutionalization. Those who have the memories of it. Those who try to ride a bus. Those who try to buy groceries. Those who wrok. Those who want to work but are not able to train for the job due to discrimination. All levels of intellect and worldly awareness. We all know we are being oppressed. We might not know the words for it, but the feelings are there. We all feel the changes when someone becomes educated as well. We all benefit from even one moment of advocacy.

I often hear parents disparaging their disabled children with in earshot. Sometimes they do not bother to try and hide their loathing. They all want a cure. This is very common with autism. The people wanting a cure want me to die. I would not be me without my autism. I am not sure what the suffering is that I am supposed to endure. All of that suffering comes from outside. Some of it is not actual violence against my person, some of it is just the experience of the world itself. It can be painful. Most of it is however the doing of man. My parents sending me away because I was different, drugging me to try and make me appear like they wanted. This was painful. It still is. I am familiar with pain. I am not finding any specific pain that Autism caused.

Some people may feel pain. I know that some autistics are violent. Some harm themselves. Instead of curing the entire mind, throwing out the person, shouldn’t we focus on trying to help them to learn how to not hurt themselves? Spending years without a diagnosis because I could do what it took to not die, I could blend, my perspective is different. Who would I be with a diagnosis and proper developmental treatment?

That is the reality. I chose to blend in. I choose daily to advocate. I choose every moment. I am hyper aware of my choices  but are you? What is the reality of the choices you make? Do your choices oppress someone else? Do your choices free someone else? What balance can you offer the world by making good choices? This is the reality of choice.

Kitty Retiree

I judged a Toastmaster’s competition today and did so without Sprite at my side once again. My beloved Service cat has aged, she has begun to fall ill too often to work, and now is a retiree. As of this morning I no longer have a working service animal. Not outside of the house anyway. Sprite will still travel with me if I will be going somewhere over night, but beyond that? I do not feel confident in her ability to perform or to stay healthy. Despite my happy day this is still a moment of sorrow.

She is six years old, and with her history she has worked long for her life. She came from starvation and ill health, therefore I cannot fault her for her body quitting. She was upset I left her this morning, and there were consequences, but there were still good points too. It turned out a service dog who doesn’t behave at all around cats was at the contest today. Sprite’s at least partial retirement saved us from a fiasco.

What does this mean for me now? Well, it means I need to find out if there are any dogs I am not allergic to, I need to consider a horse though I do not think a horse will be compatible with my life style, and I need to start saving up cash so that I can feed another animal. Sprite will no longer need her monthly payments though I think I will continue them, so that she has the benefit of consistency. Perhaps I am wrong and with a bit of extended rest she will resume working. I still need to persue another avenue.

Does anyone have a service poodle? I know I am not allergic to purebred poodles. I had one once upon a time, and depsite his behavior issues I could pet him and brush him all day long, without any problems. No rashes, no boils, and given that the Hidradenitis Supprativa has it’s own sets of issues the last thing I need are more sores and skin problems. I will begin my quest for a service poodle, though this could take years. I feel fear, I feel sorrow, but I am happy for Sprite and William. They will get to play and pounce daily. Sprite also can protect my socks.

That is William’s latest fetish, he has stolen my socks! My Person caught him in the act this morning, and described the act as cartoonish, cute, but ultimately detrimental to my ability to own socks. Sprite can take care of him, she won’t be lonely, and that is important too.

This is my first loss of a service animal, but I am thankfully able to keep her around as a pet. My heart aches, yet she is alive. That is reason enough to celebrate. I do know I cannot handle training my own service animal at this point in time. I am too weak physically to cope with a dog if they misbehave, I cannot afford to introduce another cat into the house at this time as the two we have are bonded and the other cat would cause mayhem.

The ecosystem of my household is balanced, My Person does what he is needed to, we also share our love and intimacy in ways that are unique to each of us, the interactions and feeding schedule with the animals has it’s own balance, as do our activities out of the home. The balance must shift, but, to add stress to the lives of my animals adds stress to me. A dog will be stress yet a cat moreso.

My one regret with sprite retiring is selfish. I regret that she cannot be with me to tell me when my body is going to fail. I regret that she cannot remind me to take my medication, she is my caregiver. I must adapt, yet I feel that same fear that I felt when I started training her. What do I do now? How do I grow? How do I continue living?

I do not have the exact answers but this is another learning point. I have no choice but to go forward. I choose life over stagnancy. I will adapt. I will find a way to thrive, i will find a way to live. Sprite will have a longer life if I respect her medial needs, and I cannot be cruel to her. I love her too much to force her to risk her safety.

Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

Summer and the Service Animal

I think it is technically Spring, though I keep waking up to 90 degree heat outside. This has had me worried about how to protect Sprite during the summer, and this concern is likely universal.

Depending on where you live the heat can top 120 degrees in summer. Humans and animals all suffer exposure, heatstroke, and often die. This is not a fate I want for my service animal, she is my partner after all. So, I started looking into those neat cooling beds that you can have them rest on. I looked at covers for her feet, cage coolers that could possibly sit inside the van, and realized just how expensive this is.

She does have a cooling collar, but she hates it. It is uncomfortable. She takes it off. She still likes to wear dresses, so they have to be thinner, and covers for her feet don’t work. She’s a cat. The ultimate solution to this worry came today via Freecycle. I love freecycling, and I hadn’t really considered the Cool beds but one was offered and after a bit of googling, it turns out this is the perfect solution for her. The bed will be used daily, and it didn’t cost me anything.

What can you do for a service dog to protect them?

Unlike Sprite you cannot pick up your dog, unless they are small, and this means they will be walking on blistering hot asphalt or concrete. I would have them sized for shoes, they make them after all. Invest in a few pairs of dog socks, and protect their feet. You wouldn’t go barefoot, so neither should they. I would save some cash by getting multiseasonal shoes. This way you can protect them in Winter too.

You can also get a mesh service dog vest, if you use one. This will give them greater airflow. Some dog breeds also have sweat issues, where they do not self regulate their temperatures well. I would carry a mysting spray bottle with me, to cool them down periodically.

Don’t forget that no matter the breed your service animal needs constant access to water. You can carry or have them carry a collapsing bowl, water bottles and call it good. Sprite uses the Pet Top nozzle on her bottles, and in summer she can down over a gallon. This means of course that your large dog breeds will need more.

You will likely be using sunblock, and there are some sunblocks that are safe for your pets/service animals. I haven’t found one that works for me and Sprite yet but, we are hunting. All animals need sun protection, but especially those with pale skin.

What about their eyes? Doggles, a dog/cat/most animal sunglasses set work great. Sprite wears them. She didn’t like them at first but, being able to see when I was cringing away from the light and it’s horrible brightness? She began to like them.

I still recommend cooling collars as well. Sprite may not like hers, but, on the hottest days she will give in, just to save herself. On those days we usually wait until the evening before going out. Don’t forget that some regions are prone to sudden cold snaps once the sun is down, and after a day of high heat this can feel more extreme to your partner. I carry a back up rain coat and a back up heavier weight coat for Sprite.

There is no such thing as traveling lightly with a service animal. Don’t forget too, that you need just as much forethought before going out this summer. You need to drink extra water, you need to protect yourself from overheating, especially if temperature makes your disability worse.

So, happy Spring!